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09/02/2011 02:53 PM

Coughing & Lupus

mssharona
Posts: 12
New Member

I've had a terrible cough for at least 20 years. So bad at times that it's made me heave as though I'm going to vomit. I've run the gammet on tests as well as ENT's, allergists, pulmonologists, primary care doctors etc. I was diagnosed with lupus in January and while I was not pleased to find out I had lupus, I thought FINALLY an answer to my cough but the rheumy does not think that lupus is the cause. He told me that if it was that I would be pretty sick. I started seeing a 4th pulmonologist and he's running a series of test but says that the tests so far have not really honed in exactly what it is...could be pulmonary fibrosis, lupus or a few other options. I have to get some more blood work and then possibly have a gallium scan.

I'm wondering if anyone here has experienced respiratory issues along with their lupus and what their experiences were.

Sharon

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09/02/2011 03:14 PM
afmom
 
Posts: 736
Member

I have a cough I cant get rid of but I have a small amount of scarring in my lungs. Other than that I'm sorry but I can't help much. Oh and I smoke as well which I need to stop especially since I have Lupus but I'm not having much luck with that.

09/02/2011 07:08 PM
mumeva
mumeva  
Posts: 6147
Group Leader
I'm an Advocate

I also get a cough that is very dry and I also get several times a year laryngitis that will last for several weeks. It just pops up out of nowhere...I usually don't have a cold or a fever just this laryngitis and I was reading about this and it does say that this could be from the Lupus. I am not sure about the cough....I will have to look through my Lupus book and see if this is part of Lupus. I don't have problems with my lungs with Lupus....this is a good question.

Eva


09/02/2011 08:29 PM
redhairali
redhairali  
Posts: 3740
Group Leader

I have the cough right now that is driving me nuts. It a dry cough, my kidney doctor said it is from my lisinopril. It comes and goes for no reason, he cut the dose and I am hoping it will help.

Alison


09/04/2011 06:41 AM
Pandora74
Pandora74  
Posts: 1985
Senior Member
I'm an Advocate

I also have a dry cough and it comes and goes. I generally get a mildly sore throat to with it. So I am not sure what the cause is. Have you tried cough suppressants and do they work for you? I wonder if your doc could give you a prescription cough med to atleast see if that works. I know that my problem is mild and it comes and goes but it drives me nuts to cough. It happens at the most random times and I cant imagine it being present all the time. So I hope you get relief soon.

April


09/04/2011 06:52 AM
ncgirl
ncgirl  
Posts: 969
Member

I have scarring on the lower lobes of both lungs and have had major lung surgery in 2008. I had a Diagnostic Bronchoscopy, followed by a Mediastinoscopy and then the surgeon did a Thoracoscopy with Wedge Resection - all at one time. At that time they had no idea what I had. They thought I had lung cancer and then diagnosed me with unknown bacterial or micoplasma pnuemonia... I realize now it was probably lung involvement due to Lupus. I was not diagnosed with Lupus until 6/2010.

The problems I have experienced beyond the 6 week surgery recovery have been dry cough and chest pains and numbness from incision sites... I know, I am a mess Smile lol.


09/04/2011 06:59 AM
mssharona
Posts: 12
New Member

April, I've tried a lot of meds to stop the cough. They even put me on lyrica for a while thinking it was spasms of sorts. I just can't stop thinking that all of this is lupus related although I don't have a clear answer...at least yet anyway. It's all so frustrating not knowing. I'm tired of being in public and having a coughing fit as everyone looks at you like you have the plague.

09/04/2011 10:01 PM
lelandmm
lelandmm  
Posts: 1
New Member

I have had a bad cough since the middle of June.

My doctors just keep telling me to take more cough medicine.

They have given me so much cough medicine that my insurance has stopped approving it. I can only take OTC now.

They have me on an inhaler, but its not helping.

I go through several spells a day where I cough so hard I stop breathing.

I had one severely bad spell a few weeks ago and I made my boyfriend call 911 because I couldn't breathe. I ended up catching my breath and I went to an urgent care instead of the ER, and now of course my insurance wants to deny it.

Anyways, I think my cough is what lead to th disagnosis. I had one doctor listen to my cough and tell me I sounded like I had COPD.

I dont smoke, I dont live with a smoker. I dont work with asbestos or chemicals.

I dont come in to contact with anything but household cleaning products that I have a fume. I have no idea why that one doc said COPD.

I hope that eventually I can get this cough to go away. Having these fits several times a day is driving me nuts. I frequently have them at work, and people look at me like I'm faking.


09/05/2011 08:56 AM
mssharona
Posts: 12
New Member

I know exactly how you feel about coughing especially at work. I sometimes have to put a client on hold because I can't stop hacking. It's quite embarassing. My doctor is running more blood work to hopefully provide a more specific diagnosis. Good luck to you. Keep us updated.

09/06/2011 05:02 AM
82nd
82nd  
Posts: 252
Member

I have had respiratory issues since I was a year old. I was first hospitalized at age 3. I have seen a few pulmonary docs in my time. My capacity is outstanding as well as my transfer however the cilia do not seem to function well; Hence my lungs fill with fluid and other rubbish. To date no one is willing to commit to any diagnosis why this failure is accept to say I am severely allergic to everything. I can tell you that immunosuppressant's such as imuran and prednisone really help with my breathing. I also use albuterol and steroid inhalers. I switch between (flovent & Foradil) and Symbicort. These are also very helpful. Without the steroids however my lungs will fill with fluid and whatever else and I will stop breathing; this has happened to me on several occasions. Of all the drugs I take I squirrel away the prednisone and albuterol. These two will keep me alive the longest.

Ray

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